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Hopefully he was able to find someone to engage with his discourse in the way he wanted, before the whole book drops. It’s a shame he wouldn’t clarify what his arguments are because it’s a bit unclear.

Feels like a fad. But am not a scientist.

Ironically, I found his article boring and tedious because it’s the same old script. Plucky outsider dares to speak the truth others can’t and won’t hear. The trouble is, not only is the subject/key themes old hat and been done to death but also the drama and framing is doing more of the heavy...

the good standard in air quotes says it all so succinctly. IIRC Tyson was happy to explain, at length, the process and references and underpinning of questionnaire construction and validation, and why this questionnaire is in all ways perfect. And of course, Tyson has ME therefore you cannot...

I think asking sick people to pay for something repeatedly until one works is as bad as the junk journalism, promoting junk science which causes sick people to pay for treatments which haven’t been properly tested. I guess that’s why we construct naratives because nobody really knows anything...

If it helps, I say “bandwidth” instead of baseline. There’s a vague range of activities I could do, most days, that probably wouldn’t provoke PEM. Of course you must also bear in mind that it’s not only “activities” which provoke PEM (for example if I caught a cold, have hormonal issues, a...

Well some people seem to want to analyse everyone else’s position and complain about theirs, rather than try and build partnerships and spread the benefit.

AL wrote an article analysing narative and tribalism but then he seems to be part of the narative and tribalism himself, joining in online with gusto but also unable to find anyone to discuss the article in the way he sees as fit. A quixotic position to be in. Strange, even. Nothing about it...

I noticed in the Wired article that some people had to do a few different brain training programmes before one worked. I hate to be a bumbling and biomedical-obsessed “let’s quantify treatments with a trial” kind of patient advocate, but if anything this undermines the brain-training case...

Probably needed to speak to someone given his own “I met the criteria for ME” story wasn’t all that straightforward. As I always say, whichever side you may be on, he is not a reliable narrator, he can’t be doing the credibility of these programmes much good.

The brain training neuroplasticity lobby would like everyone to know they are not psychologising anything and the believe it’s real. But also cured by talking.

It’s a weird space to be in, to have had to actively and doggedly campaign and advocate and be harmed, and to be getting some recognition, relevant research and investment into scientific biomedical causes and treatments, to immediately then be cast as the playground bullies/establishment...

It’s not about the specifics, it’s about the framing. You can’t fight a rumour. The most basic form of NLP is to have a bit of truth then build agreement (obviously having some truth in your lies predates NLP but surely neuroplasticty fans are on the NLP train too?) Yeah no NHS has ever been...

It’s annoying but it’s really better to just ignore them, he sounds hyperbolic and irrational, let him crack on, lol an him @ Nice Comms, which will probably be an NHS social media intern casting an eye over and going “ok mate, not worth replying to”. Scarlet for him. This framing and language...

In Liverpool it is the guy who used to be on Oxford Circus years ago until he got an ASBO “don't be a sinner, be a winner”. He must have moved back home. He wants to ditch the PA system and get on X!

Well this seems like something the brain trainers could test scientifically. Y’know, it’s stats and data not qualitative interviews. Also something that could be tested in a control (non ME/CFS non LC) at the same time.

This is exactly how The Salt Path happened. Who was the disabled writer who did a brilliant blog post about how publishing kept telling her they basically want a recovery arc?

Also a good question. I just think if they are moaning that science cant measure things properly in relation to brain training, well it can measure that so they should run a trial.

It sure was a choice to categorise ME/CFS patients as any kind of homogeneous group. See also : pwLC, Scientists, Researchers. User generated message and topic fora have rules about what you can post, who knew? I guess thanks to the internet, we are all “patient activists” now. Whether you...

Well, yes the article is very much without sources. I’m not sure it’s anything Andy needs to look for, I was just asking generally